Tuesday, August 10, 2010

studio to work out the kinks. The children would have to see me at my worst. Not to mention that some of them had never met me. I didn’t have a choice. As always honesty proved to be best, especially with children. On the first day of every week before we left I would sit them down and without going into too much detail I would tell them why I walked the way I do and not to worry it was only temporary until my medicine kicked in and my joints “got oiled.” By the end of my speech I always finished with the happy note, “Hey, but we can park in the handicap zone!” That usually brought cheers and laughter. By the end of the week children being who they are; they were either helping me or wanting to use my cane.
Of course the children loved JM. He was a big goof ball that loved to joke around with them. He could even make the visually difficult fact that he had to lift me in and out of a chair comical. That of course made some of them want to try it; and of course that is where I drew the line. The stairs to the gazebos were the most difficult, even on a good day. As part of the original structures of the park; only one was handicapped. All the restrooms however were. The gazebos were approximately spaced anywhere from fifteen to twenty-five feet apart. Climbing the stairs and walking that distance with a cane on uneven ground for me made Jack and JM very nervous. It was a comfort to know that they always had an eye on me. Being who I was, I insisted I do as much as I could myself. My knees were my worst problem. Every time I sat or rose it would feel as if someone were stabbing hundreds of needles in my knee caps. Sometimes it would be so bad that it would make me fall back into my seat. It is at that point JM, with both arms under my armpits, would lift me to take the pressure off. To someone who didn’t know the situation we must have looked like we were always in an embrace. Once we were standing he would always ask me if I wanted to dance. Unfortunately every twenty minutes we had to perform this ritual. He never once showed irritation about it or complained. When he saw that it made me feel bad he would just crack another joke. A few times the pain would be so bad that out of view from the children I would cry. At those times he would sit quietly holding my hand and let me do it.
Most of the summer went on like this, with very little change. There was one day however that the pain grabbed a hold of me and no matter how much coxing from JM, I couldn’t shake it. Jack kept insisting I stay home, but my sense of responsibility was too overwhelming. The other issue that day was that I couldn’t use my cane. It wasn’t sturdy enough to hold me. I needed both my arms for support that day. It was a difficult decision, but I had to do it; I took my walker.
That was the part that was most difficult for me. When we arrived at the studio I stayed in the car while Jack and JM loaded up the gear and kids. When we got to the park JM knew how I was feeling and walked with me slowly up the hill until I was settled in a chair under a gazebo. As much as I wanted to cry that day I couldn’t. I was too much in view of the children. Looking back on it now, it was best that I was there. What would I have done if I wasn’t; stay at home isolated and sobbing? I never allowed that to be an option. When I think back on that summer and I think of the difficult times; that day is the first one that comes to mind.
Jack sent me home after the camp. I was reluctant because without splitting the afternoon classes, that meant he was working 9am to 9pm. I knew this would tire him out. He had so many things he had to do for me now that the last thing I wanted was to give him more. He was firm about it and suddenly I didn’t have a choice. Helping me into bed he kissed me on the forehead and said he was a phone call away if I needed him. Smiling back at him I said, “Don’t worry, I’ll be ok.” Lying in my bed looking out the window, I watched as he drove away. Within ten minutes a slow panic set in. I realized I was trapped beneath my sheet. Somehow we had forgotten to arrange them so that I could get out. One side was inadvertently tucked under my body. Without the ability to roll over or even turn slightly, I felt as Gulliver must have when he woke up tied to the ground with all the “little people” around him. I called out to Boogie. I knew she couldn’t help me escape I just wanted the company. When she didn’t respond I wasn’t concerned. She often camped out in the cellar on hot summer days and then someone would accidently close the door and trap her as well. I didn’t blame her for wanting to be in the cellar that day it was cool down there. I had learned early on with this disease how to remove my covers with my feet. That day however it was impossible. My knees were in too much pain. All I could do was lie there and take it. I wondered how long it would take before I went “inside”. Trapped in my bed I started thinking about all I have been through. A thing I only allowed myself to do if I knew it was useless to stop it. I wanted to cry but I had no more tears left. A strange peace came over me I had never felt before. It was internal yet all around me and I feared it was the first sign of giving up. At least if I were to cry it would be a form of resistance. I told myself, “Maybe it was because I was tired.”
Looking at the trees across the street I watched as the patterns of familiar faces in the leaves blew in the gentle breeze. It was then that I realized what it was; this feeling was spiritual. The faces in the leaves were comical and eased my loneliness. For months now the lights and darks among the leaves blowing in the wind visually transported me to different places; a setting that was not filled with pain and anguish. They were virtual paintings in my mind. Sometimes I saw faces while other times I saw gestures of figures interacting. It was an extension to a game I played as a child. Many people have done this as kids. It is the game where you try and find animals in the clouds. I was surprised by how easy it was to let my imagination take over. It was hypnotic and when I played this game time as we knew it would go on fast forward. The same feeling I would get when I actually was painting.
I tried more and more to see other patterns I had not yet noticed. When I looked to my right there was a street light just several feet away. It was always in a direct line to my view. Hearing some birds singing the joys of summer I realized that they were living in the top section of the lamp above the bulb. They were building a nest. They were sparrows, a male and a female. Each had a job to do and was quite good at it. As the male gathered the twigs the female took them and arranged the nest from inside. Their working together reminded me of how Jack and I were. I was fascinated by this raw and natural cohabitation that was happening just feet from my window.
The light seemed like a perfect place for a home. During the day it was hidden and protected from any possible predators; at night it was warmed from its bulb. I imagined how cozy it must be in there. Two little birds huddled together waiting for their brood. It gave me hope in this world that was filled with so much violence and war. I began to cry. But this time it was tears of beauty. I felt this was a gift given to me by God, and I thanked him. I felt if it hadn’t been for the Lupus I never would have had this experience. I hadn’t realized that several hours had past.

I watched them the entire day. I dosed on and off and when I awoke they were still there. I was pleased. They became friends; two individuals that were there for me to enjoy their company. I watched them throughout the afternoon as they busied themselves with their task.
As the light of day turned to dusk and the fifth hour arrived I found it difficult to focus my eyes in the darkening room. The birds settled themselves in and sadly I bade them goodnight. It was then I noticed the pain again. Having been in one position for so long my legs were not only throbbing but now they had pins and needles running up the length of them like electric shock treatments. Yet for an entire day, these birds had given me a gift. They had eased me of my burden of aches and entrapment. With those final thoughts I dosed off until later that night. Suddenly I awoke from a noise in the distance. It was a car door being closed. Looking at the watch I had placed on my windowsill I read the dial; it was 8pm. The light switch was across the room and now I was in total darkness. I knew that by the time Jack cleaned up after the classes it would be ten. If I was lucky I would see him at 10:30. Having slept more than I had in over a year, I was no longer tired. I wondered too if this was a gift from God or my long since deceased mother who could still watch over me. It gave me a feeling that I wasn’t alone, and made me feel comforted. I had now been in this position for six hours. Going “inside” had become a tool I could use at will. With the realization I now had of time it became more and more difficult to hold back the demons. I felt my bed was a deserted island and myself a cast away. I looked to the light in hopes of seeing some activity, but all was quiet. The silence I felt was as encompassing as my now damp sheet. Without any electrical devices to let me know I was in the real world the stillness only added to the darkness that surrounded me. The light outside the window was the only connection I had to life. I searched frantically for something to distract me from the pain again.
In a short time I became aware of another family that lived there. At night the light became a different society with dissimilar activity. Spiders had spun webs throughout the intricate telephone and cable wires that connected to my house. Wires that ironically as it was could bring communication to me from all over the world. (Yet there I was unable to even call to my cat.) How ingenious I thought for spiders to build webs there. After all it is where the moths gathered for their nightly dance. Being responsible parents these spiders were merely feeding their young. Not knowing a whole lot about the life of spiders I watched them intently as they repelled from one wire to the next like great mountain climbers. In many ways they are Mother Nature’s most talented engineers. What a work of art they made. I was certain D’ Vinci watched spiders. Suddenly my own art felt inferior. It left me with a new found respect for them. In the past I would just run when I saw one and call for Jack. This time they were far enough away, besides running had long been out of my repertoire. I watched those spiders as if they were tigers in a zoo barred from hurting me. In this case it was the screen to my window that was the barrier. Hours had past until finally I heard the front door open. “Deb,” Jack called out in a panic, “Are you ok? Why are all the lights out?” Eight and a half hours had past while I lay in that position. I found a strength that night that made me realize that no matter how difficult the pain, I can endure this.
I simply replied, “I’m fine but I think I need to move around a bit.”
For weeks after I watched the birds and spiders. Thinking a lot about this universe so few people knew existed; a place in this world where insects and animals learned to adapt to their environment. It made me think of my life and how I had handled this adversity of my existence. It made me realize that anything is possible. It was a true turning point in my growth as a handicapped person, as an individual. Then one day I looked over at the light and they were all gone. It was ok, they gave me what I needed at a time when I most needed it; my spirit.
From that night forward I had changed. Things that mattered to me in the past were no longer important. Life became a precious gift to me that I no longer took for granted. I made it a point to enjoy the little things. The birds feeding in my back yard, the patterns I saw in everyday life, the smile of success I witnessed on a child’s face. I no longer felt I was disabled and no longer a part from things. I now felt I was lucky because I was more in the real world than most. So many of us go through life without feeling; I too was one of those people. I now felt everything. And my tolerance for pain became more acute at the same time that my medicine began to take hold. The peaceful feeling I felt when I went inside from pain could now be accessed at anytime that I needed it. With this new found ability I began feeling better. As with the stress able to make me feel worse I now knew that peace made me heal. Strapping the brushes into my braces I began to paint again. I though every day about the amazing thing the human brain was. How through its power I had the ability to control if not my day…my attitude to how the day went.
I began to do more research on this subject. I found articles supporting the claim of the powers of the brain and positive thinking from diverse cultures. Native Americans, Mayans and Chinese to name a few. Even our own understandings in western cultures admit to the physiological and chemical reactions in the brain to overcome stress to the body. Is this “power” physical or is it mental? I like to think it starts as mental but then the mental state triggers a physical response. Starvation for instance is first a thought long before it is a physical reality. Starvation is something that is realized by the individual before it actually happens. Is it that realization that triggers chemicals to help the body to survive; even to the point of eating our own fats and nutrients to find the necessary things it needs? Adrenalin is a hormone that will pool all the areas of our body in a call for help under extreme stress for survival. Although it is a split second decision it is still a decision. Then why is it so hard to believe that the brain can’t do more than what we know to be true? We have all seen the parent who has a child that is physically or emotionally challenged in denial about their situation. The end result is the parent pushing the child to go beyond their limits. Or what we perceived as their limits. Through this denial the child excelled. Was it the child’s own brain that accomplished this? Was it the parents positive healing? I keep going back to the old adage “I am what you say I am.” It is for that reason I have been integrating “challenged” children into my classes long before it became popular to do so. Some of my best students were those with learning disabilities. Giving them a sense of self worth will guard against behavior issues as teenagers. I see it over and over again. I believe it is through these experiences that I never saw the world as black and white. And it is through these experiences that I feel blessed and given the gift of spirituality. Never following any specific religion; I can’t help but wonder if the heart the head and the hand are somehow connected. As an artist, I’m sure of it. As a person with a chronic illness it gives me hope.
I never did stop taking my medicine. That would have been irresponsible and crazy. For me my meds are like insulin to a diabetic. Without them my body can’t function. If my brain is misfiring and telling my white blood cells to fight and attack my good tissue; I wonder can it do other things. It is a question I am still exploring.
As the summer droned on; so did life’s little issues. You know the kind I mean. Things out of the blue that in your wildest dreams you never thought you would have to deal with.
Like…having a basement window well crack and flood your cellar. You couldn’t make stuff like that up! Fortunately this happened when JM was home and not before. After we pumped the cellar and let everything dry out we assessed the situation. JM and Jack stood in the driveway looking down at the culprit. “What do you think?” said Jack.
“I think I can fix it,” JM said confidently.
“OK, go to it.” Jack left to teach some classes. JM and I went to buy some cement. After all, how hard can it be? When we arrived at the hardware store we stood in amazement at the selection. Who knew there could be so many different kinds of cement! There ranged from walkways, to chimneys. After going through the array of shelves we chose what we thought would be best. By the time we got home I was so tired I had fallen asleep in the car. Waking me gently JM helped me upstairs and into bed. I slept like the dead for twenty minutes until I was wakened with a start. Standing next to my bed was JM with a sheepish grin. Smiling back at him I said, “What?”
“I think we need to get more cement. This stuff has gravel in it. Don’t get up, I’ll get it.”
“But if I don’t get up I can’t show you my new trick,” I said proudly. With a big smile on my face I proceeded to show him a new way I learned to get out of bed. Standing near the door he watched as I went through the first part as usual. Lifting my legs as far over my head as I could; I forced my body into a sitting position by lowering them to the bed as hard as I might.
“I’ve seen you do that before.” He said.
“Wait, I’m not finished.” Swinging my feet to the floor I grabbed a hold of the treadmill and began bouncing like a toddler excited to see the mother in the morning. With a big smile of victory I bounced right to me feet nearly falling flat on my face. When I finally caught myself I was still wearing a smile. JM began to laugh mainly because of the silly grin on my face. He laughed so hard that when he tried to lean on the door jamb for support he miss calculated and fell out into the hall. This started us into uncontrollable bursts of hysterics. It was a good ten minutes before either one of us could talk. When we did it was JM who said come on I’ll help you down the stairs.
When we got to the bottom he headed for the front door. “Wait,” I said, “I want to get a drink of water from the kitchen.” Just raising the glass to my mouth I stopped in mid air with shock and disbelief as I looked out the window to the back yard. JM I shouted as he came running.
“Did you cut down the top of that tree after I told you not too?” We had a long discussion the day before that we had to thin the trees to let in some more light. He was way too excited to buy a chainsaw. He kept saying he could do it himself; I kept saying no it was too dangerous. There in front of us taking up half the yard was a fallen tree. Large branches that were ten inches in diameter were sprawled across the rocks and lawn. The height was taller that either one of us.
“I didn’t touch it,” he explained. “I was with you the whole time.” As a matter of fact I was in the backyard right before I went to wake you and everything was fine.”
“Are you sure?”
“Don’t you think I would have noticed that?”
I looked up at the sky all was clear not even a cloud. “What does this mean?” was all that I could muster to say.
“I know what this means.” he said with a giggle, “We’re not only buying cement, we’re buying a chainsaw!!” I had no choice I had to give in. There was no way of removing that tree without cutting it. Despite the fact that he was twenty, I made him call his dad for permission.
His dad laughed at us and said, “Just don’t cut off any limbs of your own.” How that tree fell was a mystery we couldn’t explain. Why we hadn’t heard it was scary to think about.
To make light of the situation, I said, “If a mime dies in the woods, does anybody care?” That started us laughing again.
There was only one place in the yard that it could have falling without damaging anything and it did. It was as if it was placed gently into the ground missing several bonsai. The destruction it could have done would have been devastating for me.
I don’t know who was more excited about the chainsaw, Jack or JM. To me they looked like two housekeeping custodians of a hospital deciding to do an operation. I went back up stairs and turned the TV up loud. I wasn’t going to be a witness to it. They surprised me. And had the job done in no time.
As the summer was coming to a close, so was our camp. I was feeling better and getting used to the fluctuation of good days and bad days. Jack still insisted I use my cane at the Willows. He was always concerned with the uneven ground of the grass. On the last day of our last week we were all exhausted. With the day’s heat we all looked like we had just climbed a mountain instead of painted a landscape. As we headed to the van JM dragged all the gear on a dolly and Jack tried to rally the troops.
“Why don’t you take the kids to the pizza pallor,” I said, “JM and I will load the car.” Loading the car meant I watched as he struggled with the ten field easels. The only thing I could do was open the side door. JM had the keys. Turning to him I said, “It’s locked.”
“Oh,” he said, “Sorry.” He pressed the button making that annoying beeping sound. I tried the door again. Again it was locked. Turning to him again being too tired to realize it was intentional on his part I said, “It’s still locked.”
“Really?” he said so innocently with a straight face. He pressed the botton again. After the third attempt I realized what he was doing.
Laughing I said, “Don’t do this to me I’m too tired.” He did it again; this time when I looked at him he was smiling from ear to ear. He looked so funny standing there with that stupid grin that I could no longer control myself. Looking past his shoulder I noticed a lot of people standing outside at a fast food restaurant waiting for their meals to go. Staring at us I was sure they were wondering why this young boy was teasing this handicapped woman. They looked like the lunch crowd of construction workers annoyed by our antics. They were greasy and sweating. Some were landscapers covered in mowed grass. They were hot as well and probably only had a few minutes for a meal. Spattered among them were the occasional grandparents. Retirement brought them a day at the park to sit in the sun and eat. It was a tough audience and for some reason their confused glares made me laugh more. It was the kind of laughter one shared with a best friend in eighth grade math class when you’re supposed to be listening. It was the type of moment that was now only a memory for most, the kind that adults no longer indulged in. I was sure no one else saw it as funny and that just made us laugh more. Between gasps of air I said, “Don’t you know you should never make a woman over forty who has had a child laugh this hard? The consequences are too great.” That made JM roar and everyone look more intently. I begged and pleaded with him to stop as I tried desperately to cross my legs. With all the energy we could gather to control ourselves we both took a deep breath and pulled it together. “Ok, I said, “Unlock the door.”
“Ok,” he said, “I’m sorry.” With a stone look on his face, he made the sound again. I tried to pull open the door and again it was locked. Crouching down as far as I could. Laughing my statement was a defeated one, “Too late!”

In two days later he left. He went back to Canada and Jack and I were alone again. At night when the house was quiet and I walked the halls. I missed him so.
Reflecting over the summer I realized how laughter had begun to heal me. I was selfish. I wanted more of it. My joking around and storytelling had always been a part of who I was as a teacher before my illness. It was what my young students craved from me now. Late at night I realized I yearned for it too. JM taught me something that summer. Something that had always been there yet I was too involved in my own situation to see it. Everything pointed to the same thing. With my attitude I can lead a productive and happy life. I would still have obstacles but I am strong enough to hurtle them. The emotional hurtles will always be the most difficult but now I knew I could do it. When JM left for school I removed my braces.
September arrived and with the help of three and four teachers per class I was able to work again. Because of vomiting and more hair loss my Methotrexate was now taken by injection I had to give myself once a week. It was strange at first but not impossible. A month after getting the injections everything changed.
The pain subsided to stiffness. The weakness got better yet I still wasn’t as strong as I was before it all happened. My painting not only continued; but now I had more portrait orders than I thought possible; allowing me to pay off a lot of my medical debt. I came back by 95%.
Lex broke up with her boyfriend and started calling me every day. Our relationship had come back even stronger than before. The way that came about was also from the help of JM. On Christmas break he was sick of the situation she was in and drove to Connecticut to speak to her about it. She was ready for a change. She was just frightened and needed support. He helped her make the move. The act of having my daughter back healed me more. It will be another thing I will always be grateful to him for.
When I reflect back on my experiences of those two years I know now that through determination and family support anything is possible. Strength is a relative term that is greatly influenced by your surroundings. For me it was being surrounded by my students some as young as five. This strength of surrounding includes medical surroundings as well. But most importantly the resource of our own brains and spirit will in the end save us. As the good witch told Dorothy, I always had the power to go home. And although I never really left; it’s good to be back.

He adjusted doorknobs to make it easier for me to turn them. He placed an extra step out the back door. Then he put a lock on our front door because he felt it was time we had one.
The best part about JM was his spirit and constant joking around. Whenever we were together we would laugh with humor befitting of children in middle school and were proud of it. It was funny to see others around us not joining in. We would look at each other and just laugh some more. It was that sense of camaraderie that I needed. It was better than any prescription.
The day finally arrived for me to go to BWH to see my new doctor. When we got there the receptionist was expecting me and the waiting room was empty. Among the regular seating were also some raised chairs. It was a warm and welcoming room that was already addressing my needs. I wasn’t there for more than five minutes when Dr. Shin came out to gather me himself.
He was a shy unassuming Asian man who on first talking you realized how smart he was. With his soft and concerning voice he made me feel at ease the minute we met. He was an intern. Because the BWH is a teaching hospital I had several resident doctors reviewing my case as well. The thought of that many minds concerned about me was comforting.
After our introduction he went straight to business. He told me he had received my test results but wanted to ask me some questions first. I was to answer them yes or no. The first one took me off guard. He asked, “How many miscarriages have you had?” This wasn’t a question of “if” I had but instead “how many”. In an instant the burden of fault I had carried for so many years lifted. I was not a bad mother unable to protect my children.
Then he began a list of words; hypoglycemia, low blood presser, sun rashes, red mask on the face, raynoids, hair lose, hysterectomy, there were eleven in all and I answered yes to each one. When he saw I had a daughter he seemed pleased and said, “Do you realize how special that is?”
My answer was a simple statement, “Everyday.”
He then put down the folder and paused. Looking at me with care in his eyes he faltered ever so slightly.
Taking the lead I said, “Its Lupus isn’t it.” It was a statement more than a question. Suddenly my entire life made sense.
He said the tests were positive. He also told me that in combination with the eleven questions there was no doubt. In reality he said it only required a yes answer to four of them. He seemed surprised that I hadn’t been tested for it before. I told him that I actually had been tested for it as a child when my insurance was better. Back then it always came back negative. Until I did the research on line I had no idea I could get a positive after all these years. When it became a possibility I insisted on the test with the other physician. He said, “That was smart; you were right.” Even though neither of us spoke it we both knew we were all thinking the same thing, “Why didn’t the first doctor see this right away?” After all he had my medical history and asked me most of the same questions. I looked over at Jack. I saw a look on his face that was both anger and concern. When our eyes met all we could think of was Effi.
Fifteen years ago, Effi was a friend of ours. She had Lupus. Over the course of the five years that we knew her we saw her struggles. Her difficulty standing, the obvious pain she was in. Until finally yellow from a malfunctioning kidney she couldn’t fight anymore. In a short time she was gone.
Afraid to ask, it took all the muster I had, “Am I going to die?” Without a definitive answer his reply was that there is a lot of new research and everyday more and more. People are living much longer and some into old age. It is hard to say what I was feeling. It was a wide variety of emotions. The first was the anger at the care I received from the original doctor. The arguments, the snide remarks, not to mention, the expense and torment I went through.
He let the information he just gave us sink in. Next he invited one of the residents into the room. He was an older man with a gentle face. With years of experience and compassion, he told me what to expect and our next course of action. I asked him if I would ever be myself again. I was grasping for any sense of hope. He couldn’t exactly answer that. He told me that it was all about controlling flares. In many ways it is similar to Rheumatoid Arthritis. Only with Lupus there is no joint damage. My thoughts went to my paintings. Jack and I sighed in unison. Unfortunately he said it can sometimes go to soft tissue. But with all the new advances we are better able to control it. He explained to me that the Plaquinel I had been taking is actually an anti malaria drug which is also used for Lupus and arthritis; but since it wasn’t working that well that we would back it up with Methotrexate.
Methotrexate had been around for many years and is a form of chemotherapy used to fight cancer. Unfortunately it also takes a few months to kick in. He said we will still use the prednisone to bridge it but we really needed to get me off the steroids. The ride home from Boston took forty minutes. After the first ten, I turned to Jack and said, “Let me see if I have this right. The arthritis would have crippled me but not kill me, and the Lupus could kill me but not cripple me.”
“I believe that’s right,” he said.
The rest of the way home we road in silence; when we arrived JM was waiting for us at the door. We added the new medicine to my growing arsenal of drugs.
I went on line to better understand what it all meant. The first thing I did was look up the meanings to all the jargon I had just heard; letters and numbers relating to tests. The first was ANA (antinuclear antibody). This is a representation of the substance against the cell nucleus. I remembered from high school that the nucleus is the control center of the cell. ANA can damage or destroy good cells. In other words my body was attacking itself. It is kind of like having the armies of white blood cells in your body getting confused. The same ones that help you fight infection or heal a cut. Now imagine them looking for something to fight and thinking that your good cells are spies.
ANA is a tricky test. It is based on how many times the lab has to dilute your blood in order not to find ANA. Because the dilution processes; the test fluid is doubled every time. The titer number refers to this process. 1:80 means one divided by eighty. Anything that is 1:80 or lower is a negative test. 1:160 doesn’t necessarily mean a huge jump. It is in fact only one jump. It is because of this and other factors that a test alone doesn’t diagnose this disease. A positive ANA is present for many other diseases such as Arthritis and MS as well. It is because of this that they also look under a microscope for a pattern when the antibodies are attacking the nucleus. There are four different types. For lupus there is a rim pattern shown strongly around the outer edge. This is the most specific for detecting Lupus. In addition he also looks to see which antigen is causing the positive ANA. Antibodies to DNA (the protein that makes up the bodies genetic code) are found primarily in Lupus SLE. What’s more antibodies Sm are originated almost exclusively in lupus patients. Sm is the name given by the doctor who discovered the test. After digesting all this information I tried to not think about it too much. Especially since the prickly sensation at my joints that felt like hundreds of little people consuming me; in fact was.
The best thing about hiring JM to work the summer camp classes was his strength. Not only could he drive the large van but he also lugged all the gear. He even included lifting me in and out of the car as part of his job description. From that day forward it also became his number one priority to make me laugh. His first test with this was loading me into the van. The van was a fifteen passenger. The running boards were high off the ground. He would help me by placing my arm on the arm pull and my left foot up on the step. To pull me up he had to grab me by the waist band on the back of my shorts and lift as I was pulling as best as I could. Imagine pulling a sack of sand out of the ocean. It was like that only not as wet. It was a trial and error effort and after the first few times of laughing and cringing, we had it down. By the third time he said, “I feel our relationship has risen to new heights!” Unfortunately I was half way in the uplift position when he said it. Laughing, I immediately fell backwards into his awkwardly waiting arms like a clumsy cannon ball dive into a pool. After a few weeks of that, lifting my leg to the running board became impossible. Never wanting to experience that again I thought of a great idea. I bought a small Rubber Maid step stool and attached Linus’s old leash to a corner of one of its legs. When JM saw me leaving the house one morning with a cane in one hand and dragging this contraption with the other he said, “What the hell is that?”
I smiled with a triumphant grin, “It’s my dog!” So excited to show him, I walked proudly to the van. Not proud like a peacock, more like Quasimodo off to work. Stubbornly insisting on doing it myself with one awkward move I dumped myself into the front seat. “Wait, “I said you need to see the best part.” I then pulled on the leash and lifted the whole thing into the car. “That is genius!” he said. Smiling I looked to Jack who was next to me. His proud grin made me to want more.
The Salem Willows is an amusement park on the water. A throw back from the late 19th century it was once a place for summer fun and entertainment. The old photographs displayed there showed woman in finely dressed floor length dresses and parasols strolling along the promenade. Today it isn’t quite so formal. The promenade (or line, as we called it) has arcades, fast food restaurants, miniature golf, and sitting like a dinosaur on the end is one of the original ice cream and popcorn establishments, HOBBS’. The buildings are mostly original. Adjust your easel at just the right angle in front of Hobbs’ and you can paint a picture so close to what it used to be that one could question the date of the paintings origin.
Across from the line is the harbor. Between the line and the harbor is a grassy knoll housing a concert shell and gazebos. That is the spot we set up camp. We choose this area under the gazebos for several reasons. The first being if it rains. There is nothing worse than painting outside and having it start to pour, especially when you’re with children. The second reason is the options. From that vantage point a painter has many choices of scenery, a seascape, a landscape or buildings. It is also handy that there are restrooms with running water there as well.
Our enrollment consisted of ten children ages nine and up plus three teachers. Jack, JM, and I fill those criteria. Sometimes my day time class would show up adding three or four more adults. Although it is called a camp, it was certainly not “camping”. We didn’t set up tents and fish for lunch. No this was a day came for art. It was a “plaine aire” class for painting landscapes. We talk about what it is like painting outside and the issues that could arise, bugs, changing light, and more annoying than that, people coming up to you and telling you about a relative they have that paints. Always the business woman, I tried to coach them at how to seal the deal and possibly sell their work. This has happened more than once with the children and they were thrilled every time. It was their validation as artists.
I would do a demonstration for fifteen minutes every morning. The students would then disperse to their chosen spots to paint. Then the teachers roamed from student to student with help and advice. I found the kids would be less whinny about their work in this type of setting. Maybe it was because they were in public.
At the end of the painting time JM would pack up the van and get it ready for the next day. Twenty minutes before we lefty we let them play games in the arcade. At the end of the week we have a critique and pizza party. After dropping the kids off to their parents JM and I would go back to the studio and teach the afternoon classes. Jack taught the evening ones. The whole program works very well and is extremely popular. Years after year we would work out any kinks and revise it for the next. Without any advertising we are filled every week in the summer.
As my illness progressed throughout the school year, the impending summer camp now became a concern for me. No longer would I have the morning or the even ground of the

“How did you do that, did you fall?” he said in a panic.
“No, I said, “I just rolled over.” My crying became more intense.
“Debra, I don’t think you can break your arm rolling over.” Once he realized I hadn’t fallen he took a logical stance to the situation. After all, one of us had to pull it together.
I, on the other hand, was on the verge of hysteria. “But, Jack I can’t rotate my arm!” I began to hypo ventilate. The breathing thing was weird. I found myself doing the Lamaz method of childbirth whenever the situation was too much for me. Unlike in childbirth, in this case it only made it worse.
Jack got up and sat with me. He kept asking if he should take me to the emergency room. Having broken my elbow before and remembering the awful experience I had there I said, “No, just sit with me.” Every once in awhile he would forget and reach to rub my back. Even that was no good. A week before that the hair follicles on my whole body had become sensitive. I was no longer able to be touched. At one point I looked him in the face with such despair he asked me what I was thinking. I stated in a child like voice through my tears, “I want my Mom.” With a look of pure love he reached over and gently touched his pinky finger to mine. No words were necessary. Neither one of us slept that night. It was that night I first started the “rocking”
The rocking was a response I would have to distract myself from what was really happening. It was an unconscious act that to this day makes me marvel at the human brain. Humming seemed to go along with it. If I rocked and hummed it would change the focus. It was a self comforting act that I was sure I must have done as a baby. Without any pain killing meds it was the only recourse I had. We did not laugh that night. Jack just sat with me all night long. The next day was a Saturday. Jack called the doctor to see what we should do. The pain was still as intense and I found myself “going inside”. “Going inside” was what I now refer to as a type of meditation although in reality it appeared to look like a mild shock I was in. Along with the rocking, I stared at one spot and began a soft humming all the while holding my aching arm. Concerned that I was in fact going into shock, Jack was constantly trying to pull me back into the real world; to talk to him. He was always able to do it, but the real world would hurt too much and soon I was gone again.
He begged me to go to the hospital. With already $8000 in medical debt, I was insistent that all I needed was a pain killer. I figured the emergency room with x-rays would be another $2000 we couldn’t afford. I realize now that our problem was not that we didn’t have insurance it was that we had bad insurance. If I had none at all I think I would have been better off. He sat on the couch as I rocked and hummed. But the doctor never called back.
Saturday turned into Saturday night. My arms were beginning to be fixed in an upward position against my chest. My hands were inadvertently fixed into fists. My bodies’ motor skills were reverting back to infancy. I no longer thought the arm was broken; now I feared it would just stay that way. Jack saw it and was concerned.
We had tried to reach the doctor so many times that the answering service knew our voice before we stated our problem. All they kept telling us is that the doctor had been informed. She no longer listened to our pleas for help. Jack still wanted to take me to the hospital, but I held my ground. I always assumed the doctor would call. At 1am Sunday morning I had to face the fact that he wasn’t and I had to go to bed. It had been two days since either of us had slept. Still in fits of pain I laid in bed while Jack read me a book in hopes that I would be calmed and fall asleep. The title was “Three Men in a Boat, To Say Nothing of the Dog.” It was a comical book written in the 1800’s and it had been his father’s favorite. Jack used to read this book to John Henry when his eyesight was failing. That night it worked. His voice soothed me and we both fell asleep.
On Sunday the pain began to subside a little. I questioned whether I was just getting used to it and wondered if this was what my life would be like till the end. I was certain at that point I would die. I was beginning to be fearful that I wouldn’t. Although I still couldn’t rotate my arm, I was able to stabilize it with a sling Jack had bought the day before. On Monday I decided to get a different doctor. Jack’s friend David had been trying to get me to call the Brigham and Woman’s hospital in Boston for months. I was afraid I couldn’t afford such a prestigious place. I now realized I didn’t have a choice. I needed a doctor who cared.
Monday I went to the studio. Working that day was, as you can imagine, impossible. I was merely an entity in a chair; and the kids tried to cheer me up. Jack had long since hired me extra staff to help. I was there in reality but not in spirit. Jack didn’t argue with me about going to work. He felt it was better that I was with someone all day. My spirits became top priority to him since he couldn’t help me medically. He knew my years of teaching would kick in and I would be able to control my feelings in front of the children. It was difficult but I did the best I could. A few parents called me at home later that night to see if I was ok and if there was anything they could do. It was a warming feeling to have them reach out to me like that. I’ll never forget it.
My adult classes were equally concerned. I was never able to hide anything from them. We had been together as a class for over ten years and felt mostly like friends. We were in fact friends and it killed me to see the concern in their eyes. One student I had was Anne. At the time she was 97 years old. A very well educated and worldly woman we became instant friends ten years earlier when we met. She had just lost her husband then and me my mother. We shared the process of grief together.
A good painter Anne was never afraid to try something new. She did this with every aspect of her life and was an inspiration to all who knew her. She became the unspoken “Chairman of the Board” for our class. In the past I would spend time asking her for advice on anything from being a wife to being a mother. She always had a good head for such things and would make complicated situations seem simple. She also loved me dearly as I did her and people often thought we were mother and daughter.
I tried to down play the situation about my health to Anne. Her love for me was so strong that something as serious as this would upset her. Given her age, I didn’t want her to worry. Although I was able to keep some things from her; such as my morning and nightly rituals, I couldn’t hide the fact that I was in physical pain. Every day I would put a hand on her shoulder and try to reassure her that I was going to be ok.
Nancy was another student I had. Although 15 years my senior we are more like contemporaries. We had a wonderful relationship. I could laugh with Nancy like best girlfriends. She also being concerned kept going on line for me and printing out any information she could on joint diseases. All my adult students were most helpful. They even set up the classes and let me just sit if I had difficulty walking. They were the most understanding class any teacher could ask for. Once again it was a look in the face of mankind.
On Tuesday I had an appointment with the doctor that had left me stranded. My first question was obvious. Trying not to show my anger I told him all that we had been through. He said he had told his secretary to call me in some Darvocet. But she never did. He still didn’t show empathy to the situation only a defensive attitude. I then said to him that I didn’t think I had rheumatoid arthritis, that I have been doing some research and I wanted him to test me for lupus. I don’t think he liked the fact that I questioned his diagnosis. He said the test was very expensive and why don’t we start with x-rays. I was defeated. Without his ok, I couldn’t get the test.
When I got home I called a friend with MS. Telling him about all that I have been through I asked him if he knew of any organization that I might turn to for financial aid so I could get the test. He told me about an insurance person he felt might help. It was the most important phone call I made. Within a week I had better insurance.
I couldn’t believe how easy it was. But to do it required a balancing act. Jack was now old enough for SSI and went that route, Lex got picked up by her father, (my x-husband).The final outcome was that I was spending $500 less per month and was now fully covered. I immediately called the doctor and demanded the test for Lupus as well as my medical records. Making an appointment with a new rheumatologist at Brigham and Women’s I felt my first real sense of control of my health and future.
A few months later, it was all over the news, that the insurance company I had belonged to was involved in a large class action suit. The suit stated over charges and little coverage. I was too overwhelmed with the present situation to get involved.
Summer hit again with vengeance. I found the heat to be unbearable for me even when everyone else was ok. For some reason my body temperature would sky rocket and I couldn’t stop it. Having had a partial hysterectomy at 41 I was certain it wasn’t hot flashes yet because I still had my ovaries. Besides I didn’t happen unless I was at work, which is where I exalted the most energy. I believe part of it was also nerves. It was embarrassing to have the parents of my students seeing my physical down fall. To reassure them I had to tell them what was happening to me. And that I would soon be seeing a new doctor.
Although I had my bad days I was beginning to have good ones as well. Dressing became easier. Sometimes I had the strength to be able to pick up a dish. Washing dishes became oddly comforting. The warm water on my hands was relaxing. But usually on my good days I would over do it and the next day would be bad again. Being an active person by nature, it was hard for me to find a balance.
Before I became ill, I used to bring Jack his coffee every morning; placing it by the bed its aroma was always the first thing that woke him. It was a ritual we had done for ten years. For the past year I was unable to do this being that the coffee pot was down stairs in the kitchen. One night at 3am frustrated and determined I decided I could do it if I put my mind to it. Carefully and quietly making my way to the stairs I began my slow decent, one step at a time. We have 14 stairs in our house. Half way down I realized I was in trouble. The strength in my legs left me. My feet became lead weights. With no way up and no way down I became frightened. I didn’t know what to do. I wanted to sit but that was impossible. I knew in ten minutes my legs were going to give way and I would fall. Although I was perfectly quiet, Jack somehow knew I was in trouble. Calling out in the night he shouted, “DEBRA, WHERE ARE YOU!”
“I’m on the stairs”, I called back, and “I can’t get down.”
Running to my aide he scolded me as he helped be back up and to the den. Sitting there next to me in his nakedness he told me he had been dreaming. When he called to me in the midst of his dream I had been missing. If he hadn’t had a nightmare he never would have heard me. The whole situation to this day makes me pause and reflect. That night he brought the coffee pot upstairs.
When summer arrived JM came to take Lex’s place as a teacher in our summer camp. His mother was Canadian and named him Jean Marc everyone called him JM. Lex was still angry and decided to not come home. I began to realize that it wasn’t just anger; it was difficult for her to see me this way. Having had to watch a mother die of breast cancer when I was young I understood what she was feeling. As a mother who was now sick I didn’t want it to cause her such anguish. JM had been a friend of Lex’s since childhood. He was a student of ours for the same amount of time. He was more than that. To me he was a son. He always did what a son should do. Over the years, when my grass needed cutting he would show up and do it. If he was at our house on trash night he took it out for us. When he was heart sick over a girl it was me he came to for advice. An intellectual he was often a contributor to the art discussions that Jack and I shared.
He had a wonderful mother and father; and I will forever be grateful to them for sharing him with us. It takes a very secure relationship with your child to be able to do this without jealousies. It was yet another testimony to their parenting skills.
JM was an amazing person. He could draw, paint, act, dance, and he scored real high in school. Not to mention he could build or put together anything he set his mind on. Freshman year of high school he put a floor in our attic. Before that there hadn’t been one. Balancing on the rafters with a nail gun, he was in his element. He was a boy with an engineer’s mind and an artist’s heart. I called him my renaissance man. His biggest problem was that he did everything so well he was unsure which direction to take for college. He ended up going to the University of British Columbia in Vancouver, Canada; 4000 miles away. I was heartbroken.
That summer, as with Lex, he was finishing his sophomore year. We kept in touch through email the whole while he was away. He understood what my needs were. It killed me to see the concern on his face when he would come home and visit on brake. I would do my best to reassure him. I would tell him what my next plan of action was concerning my health and he would amaze me by having already done the research on my behalf. Adding that to the school work he had been doing, it was then I realized he loved me as much as I did him. It was another wonderful moment in my life stirred into the soup of my despair.
The first thing he did when he got home was make sure my entire house was safe. He installed more railings and raised more seats for me. He even spent an entire day building a platform for my garden rocker so that I could sit. He knew the garden was the most important place in the house for me. He knew it was where my spirit lived. He worked it for me all summer weeding and cutting the lawn. Watching him made me want to cry. I wanted to be down on my knees with him in the dirt. It was tuff for me to sit there and not be able to work the soil.

wanted to change doctors but I couldn’t. He was the only rheumatologist in a twenty mile radius that was taking patients. The next closest place would be to go into Boston. Although I wanted to do this right from the start if I couldn’t afford it; with our tight schedule at work, that would mean canceling some classes. To me that was a last resort.
He changed my dosage of meds several times. He took me off the Advil, put me on Plaquenal and once again increased the Prednisone. Prednisone is a steroid that has many side effects, including kidney damage. I found when I was taking 20mg twice a day it caused me to bruise terribly. But worse than that it made me weepy; an aspect of my personality I was not used to. The weepiness was never for my own predicament. I often cried for others. Sometimes it would be as obvious as the morning news when they were announcing the names of soldiers killed in the war or as silly as a sappy TV commercial. Working with the children caught me emotionally by surprise as well. If a student was doing especially well with their work and I realized they were advancing, I would have to leave the room. My pride for them would well up in my eyes. My empathy “switch” was stuck in the on position and I couldn’t adjust it.
The new drug he gave me, Plaquinel didn’t seem to have an effect. When I inquired about it he said it would take several months to get into my body. I had to be patient.
Patients…fortunately it was the one aspect of my personality I was blessed with. For the past twenty odd years I have worked with children it is the first thing a new parent always commented on; my patience with allowing children to be who they truly are. I knew in my heart I was going to have to call on this facet of my personality as much as I could.
The children became my only source of relief. Watching their jovial antics and their lust for life kept me grounded. My studio class room had always been a sanctioned place to me. We would relate funny stories about our day and they would tell me about their hopes of their day’s creations. As if I was “Dorothy” in munchkin land I felt protected. Children never judged; they trust that you are in control. That trust gave me a confidence that I was. It was a positive energy that worked well for everyone. At that moment it was the best place I could be.

My mornings were difficult and filled with a balance of frustration and
determination. The afternoons brought me eases of the symptoms but never completely. My nights were hell. That is when all my emotional weakness would emerge. I cried a lot; most of the time it was for the predicament I was putting Jack through. I had resolved to the fact that I was going to live a life of torture. I just didn’t want to put him through it. That is why I never woke him at night when I was hurting. He suddenly was doing all the household things I so easily did, adding to all the things he had to do to take care of me.
During the day I began to develop a stubbornness I didn’t realize I had. The one thing I refused to give up was teaching. I was afraid to. I felt that if I gave in to this completely it would consume me, and I would never get back. The kids became helpful. If I needed something picked up off the floor several would come to my rescue at once. They were wonderful. They allowed me to be who I was now. It brought out the best in them. It proves to me that all children are born with an inherent instinct to be good and caring. It made me wonder what happens to some of them when they grow up and start wars. Because my classes consisted of a mixed age group, suddenly the older ones were helping the younger ones. The teenagers began to arrive early for their classes. Jumping in, they would sometimes sit with the younger kids and give them one on one attention. As much as I had felt we were always a community there, never had it shown itself more evident than during those years. They rallied together bringing out the best of humanity. These were the things I thought about at night and took comfort in them.
My Aunt Tara called me every day. She was very supportive and always wanted to help me. One day she brought me a walker. She said it was only for at night. She didn’t want me walking the hall unsupported near the stairs. I accepted it with a heavy heart. Now at night my steps had a different sound. It was familiar. It was what I heard when John Henry, would walk with his cane to the bathroom at night many years ago. It would wake me then and I would listen for the even foot falls of someone with an extra leg, always waiting for the possibility of having to rescue him. It was a feeling of always being on alert. I tried to be quiet so Jack didn’t have to experience that.
I learned to supply myself with the necessities I needed at night. I had a heating pillow I used on my shoulders. There was a microwave in my room that I used to prepare it three times in the course of the night. When I could no longer lie down I would walk the hall. When I could no longer walk I would sit with the walker and stack it with pillows to try and rest my head on it. When even that didn’t work and I could no longer sit, I did the most incredible thing. I learned to sleep standing supported between my walker and the door jam. A whimper was always just rising to the top of my throat. Yet I would never let it out. I had approximately ten to fifteen minutes before my body would be too heavy and I would falter. I never could go back to bed. That was something I couldn’t do without the help of Jack. Once I was up, I was up. In total I “slept”, if I was lucky, three hours a night. It was an issue that was concerning everyone; an issue that only made my healing process worse. It was late at night, during this ritual, that I first started thinking about adversity and the human spirit. I had to look as deep as I could to find mine. It was like rummaging through a cereal box as a child only to pull up a cheap plastic toy.
Fortunately, along with patience I was also blessed with the ability to be content with being alone. Isolated in my own thoughts was often my playground as a child. It was this independence that attracted Jack to me. It was a trait that he also possessed. It was this confident aspect of our personalities that made our marriage work. And now it was this that I was calling on to get me through.
I kept thinking of the phrase “Everyone dies alone”. Although I knew I wasn’t dying, I felt it could also be stated “Everyone suffers alone.” My thoughts went to my mother many times. A part of me ached that she was no longer there to comfort me. Another part of me was glad she hadn’t lived to see this. I thought to myself, “Only I can make this work.” It would be my decision if I give into this or not. I knew that my physical mobility’s were limited and there was not much I could do about that. What I did have was full control over was my spirit; a part of the soul that I witnessed in my mother when she was faced with such personal torment. It was her final lesson to me in a class I didn’t realize I was attending. All things happen for a reason and now I knew why.
These thoughts made me stronger. I had a choice. I could think of things such as this and feel better about it or I could be swallowed up by my own despair. Nothing could take my will to beat this if I chose to fight. It brought back to the days when I was lifting weights. I learned then that the mind was an incredible tool for difficulty. If you think you can do something, than you can. In that case it was the amount that I would lift. In this case it was the amount of movement I could make as well as keeping defeated thoughts out of my mind. I was also practical. I knew that my movements needed help. Arthritic aids for lack of a better word would help me lead a semi normal life again. I craved my independence back. The next day, I told Jack that I needed to handicap the house and to buy some tools to help me.
We purchased all sorts of gadgets. Ones that opened jars, another that helped me put on my socks, rails in the bathroom, a raised toilet seat, an aide to help me buckle my seat belt, (as a passenger; I could no longer drive) shoelaces that were elastic, a grabber to pick things up off the floor, and my all time favorite to this day, a back scratcher that Lex won for me at the Willows Amusement Park.
I began trying to dress myself in the morning. I didn’t shower myself I knew better; I waited for Jack to help me with that at night. My restroom rituals were similar. In the mornings when the pain was at its worst he had to help me with that as well. With the meds I was on, my digestive system was also out of whack.
While Jack was asleep at around 5am in what still felt like night I would start. I learned quickly that there had to be a system to dressing or I couldn’t do it. First, having laid my clothes out the night before I would use my grabber to pick them up and separate them on the bed. The grabber became an awkward extension of my arm. I bought some bras that clasped in the front. I no longer had the ability of putting my arms behind my back or the strength to clasp them in front and then rotate it. I was shocked that my arms could no longer reach behind me. It is difficult to find front clasping bras that have support, but eventually I did. To put the new bras on, I had to bend at the waist with my arms in the holes of the straps. Slowly standing upright I could easily get it to my shoulders. Unfortunately I would sometimes get stuck in this position and looked like a prisoner shackled in the gallows. It would take me another ten to fifteen minutes to untangle myself. If I couldn’t I had to wake Jack who would look up at me and laugh at the sight. It made me laugh as well even in the midst of it all. Laughter was beginning to be the first drug that was working in my favor. My underwear was just as difficult. I had to buy sizes that were too big for me. Placing them on the floor with my grabber I would use the same tool to carefully try and separate the leg holes on the floor just below my feet. Stepping into them gingerly I would then use the grabber to slowly raise one side to hopefully my knees. One day I noticed that while doing this my face made contorted gestures. Usually my tongue was sticking out in determination. That too, made me laugh. I could never do this task in one try; it usually took about four or five. The tricky part was retrieving the other side without then losing the first and having to start all over again. Next were my shorts. That was done in the same fashion as my underwear. My shoes were easy if my feet weren’t swollen. But that was rare. Jack usually had to help me with those. Until I found the elastic ties he had to tie them too. The funniest was my shirt. Being summer I wore t-shirts. As with my bra I couldn’t help getting tangled in it. I would then shuffle into Jack’s room again looking like a mommy trying to unravel from my confines with only my eyes showing. He would tell me every morning to just let him dress me. Every morning I would say no I want to do it myself. I actually thought I was doing it myself. The reality was that I never could. I always needed his help. Somehow though it felt like independence for me. An emotion I grabbed on to no matter how small the victory.
Lex was home with us that first summer. We argued a lot which was very out of character for our relationship. Before that parents would ask me what was my secret of having such a good relationship with her. I usually told them it was because she was naturally a good kid. At this time though, most of our arguments were about her staying with her boyfriend. Who now was not able to function without her? As a person that had little choice of dependency, it was a character flaw in him I couldn’t shake. I kept thinking about the four miscarriages I had to have her. I thought about the nine months I spent in bed during my pregnancy to not lose her. And now I was losing her to this person that she had to mother. I expected better things for her in life. As a mother I insisted on it. As a mother I also saw the stress on her face for the responsibility. It was for this reason I never asked anything of her in the form of help. I was afraid if she realized all she was doing for him and not for me she would feel awful about herself. A poor self esteem is the last thing a parent wants for their child. And under the circumstances her self esteem will be what I was hoping would eventually get her out of the current situation she was in. I kept thinking how I had done the same thing when I was her age. The thought both comforted and scared me. I was hoping she had the strength to see she deserved more.
Despite my trying to keep the true scope of my illness from her; she did help me when she saw I needed it. She often took my arm when we were walking outside, as well as other things that I needed. She didn’t know about my night time rituals, at that point it wasn’t necessary. With her bedroom on the first floor it was easy. Eventually the stress between us was too much for both of us to take. September came and she went back to school. I wouldn’t see or talk to her again for almost a year.
As difficult as that was, when I look back on it now, it was probably for the best. I was too sick to have to deal with the arguing. Every time we argued I became more ill. It was as if the armies in my blood were confused and when I felt stress they fought harder and attacked me more. Ultimately we didn’t talk at all. That hurt more than any physical pain I had felt yet.
Sam, at the time, was keeping a low profile. With Suzie gone it became easier for him. I feel I failed him as a care giver. After all I was the one that needed care. That summer he graduated and moved out too.
I had been seeing the rheumatologist for a year now. The Plaquinel didn’t seem to be helping much. It was true that I had slight improvement. Some days were better than others. But when it was bad it was really bad.
One night I did the impossible. I tried to roll over in my sleep. The result was a snap coming from my right elbow. Having broken at least six bones in my life I knew the feeling. It was 3am and I struggled with the thought of waking Jack. I had to. It was too much for me to bear. With tears streaming down my face I went to him. I was amazed with the swiftness he wakened and was on his feet. “What’s wrong …what’s wrong,” was all he kept saying.
Through my sobs I told him “I think I broke my arm.”

The house became a quiet place. No longer were we greeted at the door with an excitedly waging tale. It was difficult to get used too. Suzie concerned for our feeling mostly kept Mac in her room. With Linus gone and Lex having to go back to school I assumed it would be a little easier; my responsibilities and stress would subside. But instead my condition got worse. It had been three weeks since I first felt the pain in my backside and now it was all over. Both my hands and my feet were swollen to unbelievable sizes. I had resolved to wearing slippers all the time And sitting whenever I could. I had lost the palms of my hands. They became two balls at the ends of my arms. The toughest part was the pain and weakness. With every beat of my heart I throbbed. I assumed the pain was from the swelling but the weakness I didn’t understand. Everything was happening so fast. It had only been a few weeks since my first symptom.
Work was almost impossible. I found myself teaching more and more from a chair. With the lack of proper health care, I felt helpless. For those three weeks, for the first time in twenty-five years, my painting stopped. The odd thing was that by mid day the symptoms seemed to subside a little. I was able to keep the worst of it from all that knew me including Jack, because I always got up early. He was too involved trying to keep everyone happy in the midst of his sadness. Although I certainly was not myself; I could function. Meanwhile the lull in the stress of the house began to subside. And the tension began to grow once more. One morning I asked Suzie to help me with my shoes. “What the hell is wrong with you,” she said in what sounded like a frustrated voice. I wanted to cry. The last thing I needed was feeling I couldn’t get help without criticism. Eventually Jack picked up on the seriousness of what was happening to me. He immediately became very concerned. He kept telling me I should see a doctor. I was insisting I was ok making up one excuse after another as to what was happening to me. I was still feeling it was my own fault and I didn’t want to admit that to him. I told little to Lex at first. With her in Connecticut, I didn’t want to worry her. With all she was feeling, I didn’t want to add to her burden. It was my Aunt Tara who stepped up to the plate. Behind my back she made an appointment with a podiatrist and paid for it in full. I will never forget that simple act of kindness. When I needed a mother; she was there; despite the fact that I was now 45.
By the time I went to the podiatrist a week later my elbows, shoulders, ankles, knees, and hips were involved. Sleeping became impossible. Every pressure point and nerve ending on my body was cranked on high.
The morning the appointment finally arrived I was having a particularly bad day. To walk I needed to use an old cane we had in the house that belonged to my deceased father-in-law. Sitting in the low chairs of the office I suffered in silence. When it was my turn to be examined it took me several minutes to stand. I was embarrassed in this cramped office with all the eyes on me. The doctor stood in the doorway and watched me struggle to my feet and compose myself. As I made my way slowly to the examining room he acted concerned and asked me how long I had been in this condition. When I told him three weeks he looked shocked without hesitation he said, “You need to see a rheumatologist I believe you may have a systemic joint disease.” “This can’t be ignored.” The room began to spin for me. Grabbing the door jam I tried to steady myself. Disease, what does he mean Disease? The realizations of my denial hit me like a wave cresting the top of my head. My heart started to beat faster and breathing became difficult.
After checking the warts on my feet he said he didn’t think he should touch them. He was very concerned for me and spoke to me slowly as he looked me directly in the eye. It was as if we didn’t share the same language. Why is he acting this way, was all that I allowed to go through my head. In that same slow and concerned voice he said he was afraid if he treated my warts there was a chance of possible infection because of my edema. He called a local rheumatologist and made me an appointment. Because he was so booked, the rheumatologist couldn’t see me for another week.
By the time that day arrived I was beside myself. Alone with my thoughts I wondered what it all meant. I was afraid to look anything up on line the that week. I wasn’t ready for the information. In the mornings I could no longer do simple daily routines. My husband Jack now washed and dressed me. Opening a jar or turning a doorknob became an impossible task. My motor skills reverted to a toddler.
Night time was the worst. It felt like all the demons came out at night. It became that the setting sun an impending night fall was like a bell tolling, waiting for my torturer to appear. At eleven o’clock I would begin to get ready for bed. I waited until then so I could fool myself into thinking the night was shorter. Eventually that time would be pushed back to twelve or 1am depending on how tired Jack was. Many nights he would wait up with me. We never talked about it. He never complained but I knew he was exhausted. The more I became dependent on him, the more I feared what would happen to me if I were to lose him. As it was I could no longer sleep with him, it would hurt too much to do so. Not being able to take it any longer Suzie moved out and I took over her old room. The bed in there also had a better mattress.
This was the room that was John Henry’s bedroom when Jack and I got married. John Henry was a research scientist for MIT. A brilliant man he was widely respected in his field. He was also Jack’s father. Then it was filled with books and memorabilia that one hangs on to when they are in their aging years. It had some of his periodicals and research journals as well as his writings when he was just a boy. Having adopted Jack at a late age in his life, had he still been alive at that time he would have been 105. Among his things I had found a note he had written to his uncle at the age of eight. Thanking him for his first microscope. Having won the John Roberts Arms medal for his research in collagen, I often wondered if his uncle had seen in him the potential of what he would later become.
A year after he died it became Lex’s room. It was where she and Linus slept; always in the same bed. When it became Lex’s room it was filled with all the things that kids love. Favorite stuffed animals and wishing dust. It was the first time a little girl was in the house and the room took on a different life. As she grew and became a teenager always a creative child, I let her cover the walls with magazine cut outs of stars. At first it started out to be the usual idol photos but then it grew to be something more. She began to cut out photos of anyone that struck her fancy; pretty girls, adorable children and of course cute boys. They were all pictures of people interacting in some sort of movement. As she spent hours cutting and pasting this world she was creating, Linus would sit with her on her bed and cock his head in approval. It took her three years to complete this wonderful work of art; she would collage them together in an interacting visual symphony on her wall. As a child she never liked being alone. I think she was comforted by this illustrated display of a random crowd. By the time she left for college there were thousands of pairs of eyes staring at her. By that time they had become her friends and bade her farewell. She no longer needed them.
Shortly after she moved out it became Suzie’s room. I hated to take down Lex’s shrine to her imaginary friends but I had no choice. As crazy as it looked it was sad for me to see them go. I think it was equally sad for Lex.
In less than a year from Suzie’s arrival it became my room. Isolated and lonely I never thought I would wish to see those thousands pairs of eyes again. That room had a rich history. It was filled for so many years with laughing and giggling with an occasional bark. When it became my room, late at night there were times I would swear I could feel the gentle paw of a puppy hug. Catching in my throat would be the words “good night Linus, I miss you too.”
Even with Jack helping me it would take us approximately 15 to 20 minutes to get me ready for bed and remove my clothes. Putting my pajamas on was like trying to dress a baby the size of a full grown woman. A simple sock was a painstaking endeavor that would bring tears to my eyes. I had to give up certain things as well. I could no longer wear a night gown because I would get tangled in them. For a cover I could only have a sheet. A blanket was too heavy for me to lift caging me like a mouse in a trap. By the time the entire ordeal was over I was as exhausted as if I had just run a marathon. Jack wasn’t far behind me. We learned quickly what worked and what didn’t.
Positioning each of my five pillows to relieve as many pressure points as possible took us awhile to learn. When we realized that a travel pillow around my neck as I lay on top of a curved pillow suppressed some of the pain in my shoulder we rejoiced together. It was one of our all too few triumphs during those early weeks. Once I was settled Jack would sit in a chair next to my bed until I fell asleep. We never talked at these times. We secretly both knew we were too vulnerable to discuss it. What it all meant… what the future would be. Alone in my thoughts I felt guilt. First he had to take care of his elderly father, then my dying mother, and now me. This could not be what this wonderful and talented man’s life was meant to be. Why would God be so cruel to him? Alone in his thoughts, he silently prayed that he would not lose me.
My sleep those first weeks, if you want to call it that would last for 1 -1/2 hours if I was lucky. When my luck ran out it would be twenty minutes. My REM sleep ceased at this point and wouldn’t return for two years. The deepest I could go was to dose. Boogie sensed that I was ill and from that time on, she slept at the head of my bed. She was also enjoying the fact that she was now an only child. We were like two cats taking a nap together except mine was filled with anguish. When I did wake I found myself alone and scarred and up against a corner of the wall. I was trapped in my bed and could no longer ignore my demons. After a few nights like that I began sleeping at the foot of the bed instead. In that position I could look out the window and still feel a part of the world.
After a short time of lying down I couldn’t take the aching any longer. It felt as if every joint in my body was trying to hold itself afloat in mid air on its own. My body couldn’t relax no matter how hard I tried. In simple terms I was being tormented.
Through trial and error, I learned to sit up alone. I had to use the only joints I had left that still worked with minimum pain. It was my hips. I would lift my legs as high as I could and with the weight of my body careful not to bend anything I would lower them down onto the bed. If I kept my body ridged this would put me in a sitting position in one awkward but instant motion; the covers having been removed with my feet. Next to my bed was a heavy treadmill. Grabbing on to it I could lift myself to a standing position. That first step onto the floor sent radiating pain through my legs. It would be at this time I would begin my nightly ritual of walking the hall. I couldn’t lift my feet, so my walking was more like shuffling. Twenty minutes walking. Twenty minutes sitting in a raised chair. If I was lucky I dosed when I sat.
When the day finally arrived for me to see the rheumatologist, I felt hopeful. Someone would finally help me escape from this hell I was in. After waiting in his office for over an hour in chairs that were too low to sit; I realized how wrong I was. His office was outdated. Faded posters of Monet’s Lilies hung in cheap metal frames. The color of the room was a pasty array of dusty mauve and mint greens. When I entered the examining room, it too looked like a throwback to another time with antiquated scales and examining tables that still used a crank to adjust. I had hoped his medicine unlike his office had kept more with the current times.
He was an arrogant man of about fifty, tall and thin with stark white hair and an air of distraction on his face. He droned on for an hour asking me questions in a monotone voice not showing any form of feeling. He pressed my joints in certain places and after seeing the nodules growing on my fingers and elbows he clinically diagnosed me with Rheumatoid Arthritis.
He said it was systemic. He called it an autoimmune disease. All I heard was “cripple”. In my head I wondered if I would ever be able to paint again. I thought of Renoir and the difficulty he had with this disease. And although I have never been fond of his work, it was all I had to hold on to. I was immediately put on prednisone, vitamins and a very strong prescription Advil. He also put me in arm braces to protect my wrists. He asked to see me in another week.
When I went back to him I was worse. The arrogant questions persisted. He kept asking me to rate my pain on a scale of one to ten. With it elevating every time I saw him this was a difficult task for me. If the previous week was ten then the next week was a twelve. He became impatient with me and would role his eyes. I didn’t fit neatly in the “little box” of rules he expected of his patients. For some reason he couldn’t accept the concept that a patient could get worse with time not better. All he would do is change my meds again and ask to see me in another week. Every time I left his office I felt beaten and worse than when I had arrived. This scenario went on for months.
He also didn’t like the fact that Jack sat in on my appointments. With all the jargon I was hearing from this doctor I no longer trusted my ears alone. Because of my heightened state of pain all I heard was “blagh, blaugh, blaugh”. Not unlike when I talk to an auto mechanic. Jack also being who he was would never consider me going through this without him. He knew I was only hearing half of what was being said. My brain kept shutting down when it could no longer accept the information. On one particular day when Jack couldn’t find a parking space in the lot, he had to wait outside. The doctor noticing that he wasn’t there asked me in a condescending voice, where my bodyguard was. I felt like an idiot. He infuriated me week after week, until one day through my own snide remake I reminded him that he works for me. Our doctor patient relationship went from bad to worse. I

through the door of the studio, Lex was sitting on the model stand. She was nine years old at the time. Linus was so excited to see her it was if they had been old friends and had been apart for a long time. He gentle climbed into her lap and went to sleep. It was nobody’s choice. In his mind he had come home.
They were inseparable. They played together, ate together and slept together. He was a quiet and well behaved dog. The only time he got riled up was when he saw young boys wearing baseball hats. That’s when he would bark. Even then I feel it was to protect us. When Lex left for college Linus was as heartsick as Jack and I.
He slept by the front door for two weeks waiting for her to come home. That’s when I became his surrogate. He was so distraught he was like a toddler waiting for his mother. Gardening with me became his new pastime. He was eight years old when we worked in the garden that spring. With great burden he would haul himself up and reposition himself next to me as we inched our way around the winding 600’ area of stones. Sometimes Mac would join us. He was like a hired clown at a birthday party. You were never comfortable having him there and yet inevitably he would make you laugh.
I remember questioning to myself why I would allow myself to be caught up in such a laborious task for my spring break from classes. The fact that everyone else in the house was asking me the same question made me think about it more. The answer wasn’t too difficult to find. With trying to keep everyone happy, I was under extreme stress and I wanted to be alone.
My days now consisted of picking up after Sam so that Suzie wouldn’t yell at him. We were also helping Sam deal with the social ramifications of high school including his responsibility to school work. When we discussed this with him we were painting a better future for him to see; as if it were carrot dangling in front of his nose. He equally won as many races that he lost that year. Sam was also a musician. He played many instruments and although it is not my forte, to me he sounded pretty good. Having a musician in the house as, I’m sure many of you know, takes patience. Having a teenager in crisis that is a musician takes finding a strength you only wished you had. Jack and I having worked with children for so many years have that kind of patience. Suzie, with her own issues didn’t. As peacekeepers we didn’t have a choice. Sam was as most kids are, pretty adaptable. He tried as best as he could to not ruffle any feathers. For me as his care giver it was a concern. Children shouldn’t have to feel so stifled especially when they are dealing with such grown-up issues. Suzie just wanted him to be an adult. Lex did what any daughter would do…she stayed away.
Lex didn’t have patience for such things. She had empathy for Sam when the situation first arose. But the first time she came home and experienced how much the house had changed she had different feelings. Suzie living there just made it worse for her. She also couldn’t understand why we disapproved of her boyfriend. We didn’t understand her love for a man that didn’t believe in her as we did. When Lex did come home she fought with us like a person dangling on the end of a rope. She was trying to hold on to that last bit of childhood she had. Yet at the same time, she was trying to be an adult. She was living a duel existence. Tending the garden was my escape from these explosions that were happening all around me.
After the first few days of working with the rocks my fingers started to ache. Not being afraid of physical labor I figured it was just from overuse. When I was eight I had complained of severe leg pains at night and in the mornings. Year after year my mom would take me to the doctor and every year the doctor called it growing pains. After it was obvious I was no longer growing he diagnosed it as Juvenile Arthritis. When I questioned my mother about this; she said what a lot of parents said back then. “Don’t worry about it honey, a lot of people have arthritis and they learn to live with it. It was probably the best thing she could have said. I didn’t feel different. With not much that could be done with treatments at the time; I learned early on that it was just a fact of life. That is why on that day in the garden I ignored the familiar pain and kept on working.
Linus and I would spend the entire day in the garden and climb sleepily into our bed to wait for Jack to return from his evening classes. My bedroom became the center of my home. My house was no longer my own.
One night Linus had difficulty getting on the bed. As I lifted him up he moaned softly in protest. This was unusual for him and I became concerned. Rubbing his back I talked gently to him until he was fast asleep. I had not realized it at the time but that night would be the beginning of a three week journey that he and I would share descending into illness.
For Linus he stopped eating and at times became lethargic. We took him to the vet and soon learned he had cancer of the spleen. It is condition that is common in large dogs and it devastated us. With the vet’s advice he had surgery. When he came home from the hospital a few days later he just wanted to be left alone. He sat in the living room with a big cone around his neck and only lifted his head to give us a loyal glance when he could. He was sore afterwards but he was alive. The only solace he had was sitting with me to work in the garden. To get him there I practically had to pick him up. He was a big dog and it was difficult for me. My fingers were still sore but I wanted him to feel like he was still a part of my world.
We fed him an organic diet which also consisted of Chinese herbs. The vet said that he had seen some success from this treatment but couldn’t guarantee anything. It was expensive but I never regretted it. We stopped short of giving him chemotherapy. I didn’t want him to suffer. Those few weeks he came everywhere with us. We were afraid he would die alone. The house became a somber place. For a brief time the bickering between our guests had stopped. Everyone walked around lost in their own thoughts with the same respect of a hospital ward for the infirm.
Lex came home more often. I was happy to see her yet it didn’t ease my sadness of the situation. It was unbearable to watch her in such anguish over him. Combined with her heartache over her relationship woes, I’m sure it must have been difficult time for her. When she had to she hated to leave him to go back to school. When she left she would look him in the face and gently kiss him on the nose as if it were the last time. As a mother I tried to comfort her. But she didn’t want my comforting. Instead she would argue with us about the current situation of Suzie, Sam and her tumultuous relationship between us and her boyfriend.
In the midst of all this stress and despair I had developed strange symptoms of my own. The first thing was an odd painful non muscular sensation in my right butt cheek. Finally I spoke to Jack about it. Making light of it I laughingly said to him that I thought my butt was broken. Jack said quizzically, “What do you mean your butt is broken?”
“Every time I sit or stand I get a stabbing pain in my butt”
“I’ve always said you were a pain in the butt.” he stated smiling at me. We both laughed. He is the type of person that loves to tease. I always said it was because he was an only child. Now he sees me as the little sister he never had.

Since there were no visible signs of injury, we agreed it was most likely from all the work I was doing in the garden and maybe I should leave the rocks as they are. But of course I didn’t. The thought of leaving a job half done was not something I did easily. Besides there were other more important things I had to worry about.
The next day Linus started to look bad again only this time my cat was to blame. Her name was Booger but we always called her Boogie. We acquired Boogie when she was just four weeks old. The first few weeks she lived in my breast pocket. A black angora, she looked like a pompom with eyes and a tail. She was cute yet feisty; which is how she got her name. She lived in Lex’s dollhouse the first year we had her. We called her the sniper back then because she would lay in wait for someone to walk by and suddenly reach blindly out a top window and swipe at you. She was always jealous of Linus who had come to us several years after her. In their relationship she was the boss and he always let her be.
That day while he was most vulnerable, she left a puncture wound in his side; in his weakened state it refused to heal. As much as I loved my cat I never had felt such disappointment in her. I never thought she could be so mean. The vet told us that if Linus didn’t have another surgery he would be dead soon.
Suzie’s dog Mac was upset by this turn of events. He never got along with Boogie either. He refused to leave Linus’ side, kissing him periodically to let him know he had an ally. I never minded Mac living here. He was good for Linus and he made me laugh with his antics.
Around the time Boogie attacked Linus, I began to noticed another symptom I was having. Within two days I had developed plantar warts all over my feet as well as regular ones on my hands. Walking became impossible. When the first few appeared I wasn’t too concerned. I had had them before as a child and they always went away. But these grew to be more than the usual amount and quietly I kept an eye on them. I know now that I should have addressed these issues I was having but two things were stopping me. The first was that Linus was in such bad shape. The second was that I had real bad health insurance. With the expense of the vet bills I kept thinking that as soon as we get Linus out of the woods I would call a podiatrist. After all it was just a weird virus. What could he possibly do?
The pain on my backside was also still there and Jack and I were now thinking it was a recurrence of Shingles that I had the year previously. There was a part of me that was disappointed in myself. I had stopped weightlifting three years before because of knee pain that I summed up as age and my old joint pains. Since then I had begun to lose my tone and strength. In my head I deserved this. I did it to myself. After I make sure that Linus is ok, I’m going to do better, and then all my symptoms would go away. Never being a person in denial, when I look back at that time I’m amazed that I too could fall into that category.
I wasn’t completely without exercise. I did walk three times a week with my Aunt Tara. Usually we walked around the Salem Common. It was a charming place, with trees all around and a band stand in the center. There was a clay path along the outer edge of it with overhanging trees that dated back many years. Edging it was an old Victorian rod iron fence. It was very ornate and beautiful. The squirrels were so tame there they would eat peanuts from your hands. An old fashion popcorn cart sat at its entrance. A true New England setting it had been protected and preserved.
I visited this place often. I had photographed the trees at odd angles for many of my paintings in the past. Every time I painted these trees the artwork would sell. It is the place I grew up as a child. I loved going there. Tara and I had been walking the perimeter of the common about a year and averaged a mile or two each time. But as soon as my feet started acting up that became more and more difficult. I had to make the decision to take a break from this ritual we shared. I called her and told her what was happening and that for a few weeks until it went away I wouldn’t be able to go on our weekly meditative stroll.
Shortly after that, I woke up and I found my feet to be so swollen that my shoes no longer fit. That day I wore slippers to work and sat whenever I could. The next morning I could only walk if necessary; they were throbbing too much. I began teaching from a chair. The day after that my hands swelled as well. My ring size went from an eight to a ten. Gripping things were impossible. I began to drop everything I picked up. Always having slender hands with long fingers this was equally disturbing to me. But unfortunately I wasn’t able to address that either, that was the day that we had to put Linus “down.”
It was an awful day as one can imagine. We called Lex the night before and she came home. I was so concerned for her feelings of the situation that it made it easier for me to just grieve later. Putting my own needs aside for the sake of others was becoming a habit; one that I would soon regret.
She insisted she come to the vet with us. She wanted him to die in her arms. She wanted him to be held by someone who loved him and have it be his final thought. I admired her bravery, yet I was concerned for her. I didn’t want it to be her last image of him. It was a Sunday afternoon. The veterinarian office was closed to other visitors. Normally a very loud and active place with dogs barking and people talking its stillness struck me the minute we entered. It was as quiet as a funeral parlor. The vet was a tall and handsome man in his mid thirties. He had a voice that was sympathetic and tranquil. He was so concerned about our feelings the look on his face spoke volumes of the years of experience and love he had for animals. When it happened it was quick. Lex started to cry uncontrollable sobs. In a desperate attempt she grasped him so tightly around the neck it was if she was drowning in the ocean and he was her only life preserver. It wasn’t easy trying to convince her to let go of him after he was gone; especially when we were so upset as well. We were all in tears. We sat there a half hour and waited. I tried to stroke her hair, but she just screamed at me to not touch her. Until finally defeated, she released him. Her life as she knew it was no longer the same. In a short time all had changed.

My name is Debra Freeman Highberger. In 2006 I was diagnosed with Rheumatoid arthritis. In 2007 lupus SLE was added In 2008 I developed Lupus discoid. Grouped together it is called Connective Tissue Disease. A debilitating chronic illness, I went from a very active and athletic person to someone who needed a cane and a walker in a span of three weeks from the onset of the first symptom. I searched book stores and the internet for answers. I did not find anything that would say if I would have my mobility back; if the pain would be gone. I vowed then that if I did I would write something to help others answer that question. This is a documented account of that journey; of my road back.

Before one can understand who I have become from this illness one must first understand who I was and how it changed me.
Not too many people can proclaim their life was perfect. After all perfection is a perception we all have. It is as individual as a snow flake. For me the perfection of my life was molded from the people I’ve met. The job I did and the surroundings I had created. It was measured by the feeling of peace I would achieve when my head hit the pillow at night and I would think…the balance of my life was right. I worked hard for those feelings. After all I am by no means perfect. No, it wasn’t my own perfection I sought. It was the feeling that I did the best I could with the materials I had.
I was an art teacher. I owned my own school. I taught life skills as well as art to many young students. Some were sent to me for the life skills alone and I knew this. I was born with the ability to stand outside and assess a situation of others and myself; always careful of the advice I gave knowing how impressionable a young mind is.
My education was in child development which only added to this understanding. I enjoyed my work and that was the main root of feeling my life was perfect. It was a goal I strived for.
I have a daughter who was in college and a husband that was also a teacher with me. Like the workings of a clock our life rotated around each other with the precision passing of time. Together the three of us strived as a unit. My daughter whom was from a previous marriage had always been very close to me; we shared everything with each other. Some even claimed we were too close. My husband was my best friend and had been for many years. As a man that was older than me he was my mentor. He taught me how to paint, how to communicate and how to live. Life was perfect for me. I had a family I loved. A job I couldn’t imagine leaving. I was an artist that made many paintings and had a beautiful home I cherished. What more could I want? I was content.
Everything I did in life was ridden on the tails of creativity. I looked at the world as a place that was borrowed. A gift to be enjoyed and not taken for granted. I was blessed to have every day as a clean slate to paint the picture of my past that was yet to come. Somehow I knew this and because of this I would try to cram in as much as I could in the course of everyday for fulfillment. On a personal level I painted, read a lot of books, gardened, worked on my house and at night I did a lot of thinking. My thoughts were often of better ways to improve my happiness. Although you could argue why fix something that is not broken…it was with this critical thinking I maintained my happiness. Happiness is not something one waits around for. Like a great painting it has to be created.
In the midst of this life I was living, issues would erupt. Usually they were issues that involved other people. One of the parents of our students would call me at home and we were the ones to go to for advice. We didn’t mind this role. I’m not sure how it all came to be but it was a good feeling and deep down I felt that through doing good to others good will be returned. That is how I lived my life. This world for me was a practice; a dress rehearsal for more important things to come once it is done. I am not a religious person. I don’t follow any organized faith. Yet I can’t help but think that this world we live in is not all that there is. Something as precious as life cannot be blown out like a candle only to have smoke lingering in its place; a glow must be left behind. And maybe the other lives we affect are in fact that radiance. That is how it came to be that we had taken in two individuals as house guests that found themselves homeless.
It was the third week of April 2006 and I was doing what I always do that week. I was working in my garden. Ten years ago I began rebuilding the garden. It was Japanese and it was in my back yard. A large area with a lot of potential I viewed it as an enormous canvas and my plantings were the paint. Textures of green with an occasional splattering of colored flowers spread from one end to the other. There was a hush to the place not unlike a church. When anyone entered my garden they were immediately transported to another time. It was if they had entered Shangri-La. That is how it felt for me every day.
It had overhanging trees like great druids watching over their territory. These trees had been planted 70yrs ago by my mother-in-law the original owner, an avid gardener in her own right. I had never met her. She died a few years after I was born. Somehow this garden always felt like hers too. It would have been unfair for me to take all the credit. Her presence was always there. Like the secret garden in the story; I had merely awaked it.
A pond sat tucked in a far corner. It had a waterfall and plantings. It was a place the birds drank and splashed for their daily bath. The sound of the water cascading over the rocks brought instant soothing to a hard day’s work. It was hypnotic and wonderful. Wildlife was abundant in this spiritual existence. Squirrels ran rampant followed by an occasional woodchuck or raccoon. Sometimes they would stop and look at me, surprised that I was sitting there. It was at those times I realized that this was their world and I was fortunate to be allowed in it. Away from the hum of traffic and noise I would often play soothing instrumental music as I weeded and planted. It had to always be instrumental. Somehow adding words to this visual oasis categorized it in a way that was no longer sacred.
When I first started building this garden I was also into making and designing bonsai. Sometimes I would take old trees and bushes that had been in the ground for years and train them to be kept in shallow pots. I had done this to an azalea that my mother-in-law planted in the ground. Now in a beautiful pot it stands on a pedestal at the center of this shier, like a maiden of the forest. Two feet in height with a winding trunk six inches in diameter it reaches and sprawls in a pose befitting of a ballerina. It lets all know with a long and mournful note that this land was first hers. I named her Ruth after that the gardens first proprietor. It is my tribute to her.
I enjoyed this type of garden because it was shady. Without a whole lot of sun, textures and patterns were its main attraction. Flowers competing with color would have been too loud. Although I had some flowers it was very thought out ahead of time; like placing a stroke in a landscape painting.
I loved that it was a shade garden. I was never one that liked the sun anyway. It always felt like the loudest guest at a party, the one that had too much to drink; and left you wondering why you invited them. Since childhood I broke out with a rash every time I was in the sun; an unusual predicament for a gardener. It was that reason I never went to the beach. Living on the North Shore of Massachusetts, where everyone came to vacation, it made socializing as a child difficult.
As an adult this garden was my sanctuary. It was where I read every morning from the chill of spring to the impending frost. Being professional artists, it was where my best ideas came from. It was where I cataloged twenty different species of birds. It was where me and my dog Linus sat and discussed the wonderment of life. My life and my garden was exactly what I had wanted it to be. It was home.
I had spent the entire summer of 2001 working on a dry river bed. I had built it myself. I was different then. I became consumed by healthy living and found a sense of spirituality in exercise. It gave me a Zen feeling to push my body to its limits. Having worked with free weights I was very strong. Hauling hundreds of pound of rocks to create the illusion of a dry riverbed that has been there for years was exciting for me. At that time I was forty years old. No, I was not a stereo typical woman. Anything I wanted or had in life I learned to push my limitations and do it myself.
My husband Jack and I had been married for fifteen years. We had known each other for twenty five. Because of a 19 year age difference between us; when we first met we were just friends. He became my painting teacher. He taught me all that I knew. He laughed at the various boyfriends I brought to the studio and would ask me what I saw in them. He became my mentor in many ways. After the first two years in the midst of this relationship we both married other people. They were both very different from either one of us. His wife was a professional woman that wore a power suit to work. My husband was an engineer that was a type “A” personality.
I had always wanted a child. After several miscarriages I had one with George. Jack on the other hand had no children. His wife didn’t want any. Jack came to the hospital to see me. He rejoiced with me the day I delivered and instantly fell in love with her. It was a girl and her name was Alexis. I always called her Lex. It was the first baby Jack had ever held. He realized that he was missing out on one of life’s pleasures. Our spouses never minded our relationship. They were so caught up in their own worlds. After all Jack and I were friends long before we had met them.
Over the years as both our marriages dissolved for separate reasons at different times, it was our friends that pointed out to us that we were in fact meant for each other. They saw in us a friendship that is rare. To us it was as natural as breathing, although it was right in front of us, we had never seen it. With their encouragement we started dating. Two years after that we were married. Somehow the age difference didn’t matter anymore. His love for Lex only added to our happiness.
For the past sixteen years we have owned an Art school. We named it the Acorn Gallery after the Celtic proverb, “mighty oaks from little acorns grow”. It was a school that taught students from ages five through adult to draw and paint. Because many of our students would stay with us through adulthood, it was a school that taught more than just art. By its own design it taught kids about life and being a family.
I had always heard that stress can cause havoc on the human body. Until this time I never truly understood that statement. Sam one of our house guests in the spring of 2006 was a previous friend of my daughter Lex. Unlike her, he was still in high school. The other occupant was my cousin Suzie whom I hadn’t seen since childhood. She was the same age as me, never raised a child of her own, and was not used to having a teenage boy around the house. Suzie also had a dog named Mac; a Jack Russell terrier that won everyone’s heart. Although a dramatic difference in age, Mac and my dog Linus’ became best friends. Being a lot older, Linus would watch over him like an old man taking care of a toddler barely keeping up with him. Mac was the kind of dog you would just look at and laugh. He was so crazy and cute. Even people who weren’t fond of dogs liked Mac.
Sam and Suzie found themselves homeless for separate reasons and we were helping them get on their feet again. Our daughter Lex was away at college.
With the extra people in our house the atmosphere was instantly different. It felt colder and unnatural. It was not unlike the circumstances on a life boat with strangers; each lost in their own world of needs. As with most situations like this, arguments between our visitors would erupt and I or Jack would have to address them. We both knew that the situation they found themselves in was difficult and reassured them that it was only temporary and soon their lives would be their own again. Sam being so young was still dealing with the fact that until he found us he was on the street with no place to go. He had no relationship with his family that lived in the south. I made it a stipulation that for him to live with us he had to try and resolve his relationship with his father. I made provisions for Sam to talk to him on the phone once a week.
To make matters worse, my daughter Lex was dating a man whom we did not approve of. A fate most woman experience early in their lives, myself included.
During the day working in my garden, teaching, and painting became my only outlets. Our guests fought with each other constantly with loud screaming matches that made my blood run cold. On that particular day in April I was weeding between the rocks of the dry riverbed and cleaning out the debris from under them. It was a task that started simple and then slowly grew to a time consuming endeavor. Because of the scope of the area, I resolved to the fact that it would take a week to accomplish. With every four foot section I removed all the rocks sifted them and cleared out any soil that had gathered there then replaced the rocks as before. I enjoyed doing this chore because it was brainless and allowed me to be in my own thoughts. Also because of the bending and hauling I was sure I would be left alone. No one would think to volunteer to help. My only companion that day was Linus, my forever loyal Brittany spaniel. We never adopted Linus; he adopted us. Eight years before that a friend of ours who was still in college brought him to the studio because she could no longer keep him. She had rescued him as a pup from some preteens that had him tied to a fence and were throwing rocks at him. He was whimpering and terrified when she found him. Linus never had an aggressive bone in his body; even when it came to protecting himself. Without thinking of her own safety she went into the circle of boys and got him. Because she was in college, she couldn’t keep him. She knew that we were associated with a lot of families with children so she brought him to us. When they walked

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About Me

I have owned an art school since 1995. I write for The Lupus Magazine. I am a portrait,landscape, and fine art painter. My artwork has been shown both nationally and internationally. I make one hell of a chicken pot pie :)